Arifa Akbar: Dementia is unbearable – and the system makes it worse

 

Share
+More
Related Topics

A deluge of responses trailed this newspaper's dementia campaign last week. Nearly all the stories you shared were heartbreaking and horrifying in equal measure. Most began with the words "I simply had to write…" or "my mother/father had a similar experience" and many described a loved one's last days, months, years, in a system that sucked the dignity out of them. There were stories of over-medication, slow diagnosis, inadequate nursing care and astronomical financial burden.

Worst of all, there were accounts of sufferers being shipped to homes miles away from their families to die alone.

What did we learn from sharing our stories? That dementia is a serious illness that deserves to be seen on an epidemic scale, but also that the system can make this "long goodbye" as it is known into an unbearably painful one by its lack of money and expertise.

David Blunkett highlighted, in his piece about leaving his brain to science, that a cure is the grand hope. But as Fiona Phillips pointed out, while this eludes us, care is what counts – and government needs to give it the priority funding it deserves. One reader summed it up in a nutshell: "I am happy this problem is receiving attention. It needs to receive money."

I know from a decade's experience of my father's dementia that the doctors, nurses, carers don't mean to get it wrong, but to those who suffer, and those who watch, it may as well be wilful.

The elderly themselves are the post-war generation who were taught never to complain. Relatives often follow suit – they are grateful, they don't want to be complainers, they see the system is over-stretched, and perhaps importantly of all, they don't want to show their anger for fear it may be taken out on their loved ones. This adds to the thundering silence around the suffering.

I didn't write about my father's illness for years because I sensed that he didn't want me to make a fuss. However awful his care, he would nod and say it was "fine", seeing himself, I think, as an inconvenience and wishing for death as a way to escape. Now, I realise there are so many, far more tragic stories untold.

My grandfather, before my father, suffered from Alzheimer's for decades. A revolving circuit of extended family members would look after him in his home in Lahore. He died in his 90s, but it wasn't his illness that killed him. He suddenly stopped eating when his wife of 75 years suffered a fatal stroke. It was as if he decided that he didn't want to live without her. He died nine days later. I wonder if he would have lived as long with Alzheimer's if he had been in Britain. I'm not suggesting that Pakistan has a better system of dementia care, but here, the elderly ill are made to feel a burden. My grandfather never was.

What is most frightening is that dementia is a future that awaits "us", the young and sound of mind.

Simon Kelner is away

React Now

Day In a Page

Read Next
Sibling rivalry: The public enemy (left) confronts his brother  

The new version of Ibsen's Public Enemy is a drama where democracy doesn't win any votes

Tom Sutcliffe
 

As Hay-on-Wye opens this week, it's time for book festivals to open a new and exciting chapter

David Lister

Johnny Marr talks relationships and reunions

He's worked with Modest Mouse, the Pet Shop Boys and Beck, to name a few, and recently released his first solo album. So why, wonders Johnny Marr, do people still hark on about The Smiths?
After the flood: From Haiti to Britain, one man has captured the devastation of our increasingly deluged lands

In pictures: After the flood

From Haiti to Britain, one man has captured the devastation of our increasingly deluged lands
Death becomes her: Meet the very modern mortician who champions 'cool' funerals

Death becomes her: A very modern mortician

Ever considered baking a loved one's remains into a cake or putting their ashes in fireworks? If so, talk to Caitlin Doughty, champion of the alternative death industry.
How long can the 'Keep Calm' trend carry on?

How long can the 'Keep Calm' trend carry on?

At first it seemed clever and cute. Then the 'Keep Calm' motif went mad, spawning endless offshoots.
The man who built Brum: A lament for the demise of John Madin's Brutalist Birmingham

John Madin: The man who built Brum

The architect's buildings were supposed to leave an indelible, futuristic mark on his beloved hometown but they are now being inexorably torn down.
School of chop: Learning the art of butchery at the Ginger Pig

School of chop: Learning the art of butchery

How do you butcher a lamb? Or make Mexican street food in a British kitchen? Christopher Hirst finds out.
James Pembroke: The man who's eaten everywhere

The man who's eaten everywhere

Few people know more about restaurants than James Pembroke, who only spent five mealtimes at home during his entire childhood.
A Berliner in 1963 – but did John F Kennedy once admire Adolf Hitler?

A Berliner in 1963 – but did John F Kennedy once admire Adolf Hitler?

The young JFK praised 'superior' Nordic races during visits to Germany
Banned Iranian director Mohammad Rasoulof to attend Cannes Film Festival 2013, his first public appearance since prison

Banned Iranian director to attend Cannes Film Festival

Mohammad Rasoulof to make his first public appearance since being imprisoned three years ago
Seeing the larger picture: Inspiring images of space

Seeing the larger picture: Inspiring images of space

An exhibition explores images how photography has shaped astronomy
Eat Spam and carry on: Wartime pamphlets could teach us a thing or two about healthy, thrifty eating

Eat Spam and carry on

Wartime pamphlets could teach us a thing or two about healthy, thrifty eating
Facial hair: Cat beards and the purrrsuit of excellence

Facial hair

Cat beards and the purrrsuit of excellence
The 10 Best salt and pepper sets

The 10 Best salt and pepper sets

Whether they're for everyday use or to make your dining table look just right, it's worth getting a stylish shaker...
Ferran Soriano: Predicting success if Manchester City 'vision' is followed

Ferran Soriano: Predicting success if Manchester City 'vision' is followed

Chief executive says trophies will come if a 'core' of suitable players is in place
Thomas Müller: We couldn't handle losing a Champions League Final again

Thomas Müller: We couldn't handle losing a Champions League Final again

The Bayern Munich forward tells Tim Rich his side have to shed chokers' tag after two recent final defeats